Hi
I feel like I’m in the deepest darkest whole ever.
I had a lumpectomy 5 weeks ago and snb with 2 nodes removed .
All came back clear .
Last week I started with a red itchy rash over the site of surgery on my breast.
3 lots of antibiotics later and my rash has continued to spread.
It has now started over my lymph removal surgical site now too.
So I have a complete red itchy sore left breast and the start of it over the other surgery.
I am absolutely convinced and petrified that I have Inflammatory breast cancer but am not being taken seriously.
I have been going back to my consultant and speaking to my bcn continually.
I feel frustrated with my consultant as she talks over me and just says she is 100 %sure it isnt.
She hasnt said why she thinks it isnt and she doesnt know what it is either but its spreading. She initially thought it was localized infection but obviously not now that it isnt going .
I cant start my radiotherapy next week now either.
I’m petrified it is ibc because I have read that it can happen over the site of incision post op from lumpectomy.
I looked at pictures and mine looks like some of them. I have the red, itchy , inflamed sore rash and its spreading very quickly over the space of the last week.
I had been very lucky to to this point as my cancer was very small and my lymph nodes were clear too.
Can anybody help or advise me ?
Has anybody experienced anything at all similar?
Hi Nat1972, I had an inflammatory rash with my stage 3 bc at diagnosis in 2017 but it wasn’t itchy or sore, just red and slightly warmer. I’ve also experienced a reaction to the betadine solution which is used to keep the skin clean during surgery. The reaction to betadine slowly got worse before it got better and I found applying hydrocortisone cream helped (you can’t usually use it for more than 7 consecutive days or it causes skin thinning). It sounds more likely that it’s a reaction, especially as it’s itchy.
Hi
I had an appalling rash that eventually spread round my back and down to waist level. It was small raised bumps that started colourless as they broke out and turned red; itched indescribably; spread rapidly and eventually scabbed. I felt sick from the itching. It was an allergic reaction to the adhesive on the surgical dressing, specifically the waterproof one which enabled me to shower. It required steroid treatment rather than antibiotics.
The language of cancer is very alarming but it’s a means by which those working in oncology communicate with each other. It scares us. Even more scary (and therefore definitely to be avoided) is online research. It’s sometimes outdated, sometimes inaccurate, often way above out heads and it’s downright terrifying. It can’t take our individual case into consideration and doesn’t give a toss about our emotions. Unfortunately, once seen, things can’t be unseen and the damage is done. I bet you’ve looked at the survival rates for IBC too? Frightening. I would strongly advise you to talk one of the nurses here to get yourself calmer and more grounded and then talk again with your breast care nurse - you won’t be the first to not believe your oncologist but if mine said she was 100% certain, I’d believe her. That’s a very definite diagnosis, unusually so.
And for your own peace of mind, please don’t look up anything else on Google. You really do need to have trust in your team If you want peace of mind. They’ve worked with hundreds of patients; they know their stuff; occasionally they are wrong but to say 100% certain means she is 100% certain. Focus on the good - as you say, your cancer was small and your lymph nodes not affected. That’s great news.
I hope you find reassurance soon x
Hi, I came across your post from a Google search. Did your rash clear up? How long did it last, did they ever figure out what it is/was. I had a little redness on my aerola, after putting hydrocortisone cream on it it got worse (I got over-heated and was wearing a nursing pad- think I had a reaction to that) and became a rash and spread. Surgeon recommended lotrimin and while it’s not gone has significantly improved. I go back in two weeks and he’ll determine if I need a biopsy. Did you do a biopsy?
I had a biopsy in Dec 2021, after an abnormal mammogram, which came back normal, but the images didn’t match the findings so was recommended to a surgeon. Had a lumpectomy on 1/5/22, came back positive for stage 1 grade 1 DCIS & IDC, had second surgery on 1/19/22 for not tissue removal and 3 lymphnodes. All clear with clear margins. I have a seroma near the incision site (trauma 3 times I assume is the reason) which is on the side of my breast not my aerola area. I also googled and it’s freaked me out. Surgeon says it doesn’t look like IBC, I’ve seen him 3 times for it and am going back in 2 weeks.
Thank you for taking the time to read this.